KevinG

After 4 years off dairy, I have reintroduced it into my diet with no problems!

The problem now is that I don't know how to incorporate dairy into my gluten-free diet. I'm looking for simple, quick gluten-free snacks or meals such as:

- Nachos: tortilla chips + salsa + shredded cheese, microwaved

- Cottage cheese & peaches or cantaloupes

- Crackers with spreaded cheese

- Cooked broccoli topped with cheddar or parmesan

What are some other good ones?

My sister (who is gluten intolerant, like me) thinks that dairy might be giving her mild brain fog and making her feel jittery. Has anyone else noticed cognitive/neurological symptoms from dairy?

Thanks for the informative replies. I still have a lot to learn about gluten & celiac disease.

The reason I've considered allowing a bit of gluten into my diet is that I've always considered myself to have gluten intolerance but not celiac disease.

I've believed this because:

(1) I hardly get side effects from small amounts of gluten, whereas many others here have severe reactions.

(2) Most of my lab tests indicate that I don't have celiac.

According to Open Original Shared Link page on AmericanCeliac.org, if I only have gluten intolerance I should not be at risk from a bit of gluten:

People can also experience ‘intolerance’ to gluten. Food intolerances are not thought to be immune mediated. GI symptoms with wheat or gluten intolerance may include gassiness, abdominal pain, abdominal distension, and diarrhea. These symptoms are usually transient, and are thought NOT cause permanent damage.

So, my remaining questions are:

(1) Is there anything in my case that suggests I have celiac and not gluten intolerance? (Apart from the general hypothesis that all gluten intolerance is misdiagnosed celiac.)

(2) Why is lactose/casein considered safer to experiment with, compared to gluten which is to be avoided strictly? I see many more people on this forum eating dairy, even if they get mild side effects.

(3) Based on the advice I'm hearing here, I might avoid all gluten, BUT start incorporating a couple of dairy servings a day into my diet and see if I can tolerate the side effects. Does this sound reasonable?

Understanding these things better would settle a lot of my confusion!

Thanks,

Kevin

I don't agree with this at all. There is a reasonable amount of scientific work showing non-celiac effects of gliadin on the intestinal mucosa and immune system. From that work, and some clearly demonstrated transient gluten reactions in people with Crohn's, colitis, and SIBO flareups, my hypothesis is that gliadin is more of an intestinal irritant than a trigger of autoimmunity in some people. For example, there was a recent paper where gliadin was shown to trigger TNF-alpha release in tissue cultured intestinal cells through a direct effect on surface receptors. Wheat also contains a fair amount of fructans, so that component of bread and cereal can be troublesome for people with fructose malabsorption and SIBO. Layered on top of this is the somewhat under-acknowledged issue of true wheat allergy, and of wheat germ agglutinin reactions, which can also cause cramping and D. I do completely agree that there is a much broader spectrum of autoimmune, "celiac" reactions than doctors currently acknowledge. The inadequacy of both celiac and food allergy testing has issues very confused right now.

By the way Kevin, with DQ2 and DQ7 (which usually means you have trans DQ2.5), your own gluten reactions are most likely autoimmune and truly in the celiac spectrum. If you're asking this question with the intent of trying to figure out whether you can tolerate wheat, keep that in mind.

By the way, I haven't eaten a LOT of gluten in a long time to have any idea how to answer your main question. My gluten ingestions are always accidental and I have no way to measure how much I ate.

Very informative post, Skylark. I pasted this into my personal notebook. Thanks.

Not unsafe, but not useful. Lactose intolerance isn't an all or nothing type of thing. Your body needs to produce only enough lactase to digest the amount of lactose you consume. Almost ANYONE is going to get lactose intolerance symptoms by consuming 10g of lactose, because your body doesn't generally handle that much. "Lactose intolerance" generally means that you don't have enough lactase to digest normal amounts of lactose. This is one reason why milk is a better test - it has what we consider "normal" amounts of lactose for a meal.

THANK YOU Tiffany. I love reading replies from people who know their stuff.

I am fed up with the lifestyle restrictions of staying 100% gluten and dairy free, especially when combined with the restrictions of my other health conditions.

I wonder if this strict approach might be unnecessary, since some tests suggest I don't have celiac. My gastroenterologist (an IBS researcher) downplayed the risk and said that my body might just be sensitive to certain proteins.

I don't mind eating a low-gluten, low-dairy diet. I just want to be able to go to a restaurant and not worry whether there's a bit of soy sauce in my fried rice, or whether my chicken tikka masala has too much cream in it.

The immediate symptoms from eating gluten or dairy are not that bad. But I am concerned about the risk of gluten or dairy causing hidden or long-term damage to my body.

I've given up getting a conclusive answer since I know medical science is not there yet. So, I'm going to lay out all the evidence right here as clearly as possible, and listen closely to the subjective judgment of the folks on this forum. In several months I'm going to NYC to see celiac expert Peter Green and hopefully get an informed recommendation from him too.

Demographic info

Male, 26 years old. Gluten & dairy sensitivity started suddenly 4 years ago after an adverse drug reaction (I am sensitive to adrenergic drugs like Cymbalta and Sudafed).

Lab tests

See my signature below for my 2006 Quest and 2009 Enterolab results.

Reaction to eating gluten

- When I eat small quantities: unclear since sometimes I might get glutened without knowing it, but I think I get mouth sores more frequently

- When I ate lots of wheat (before starting the gluten free diet in 2006), I had:

○ Mild numbness in my stomach

○ Limbs falling asleep easily (paresthesia)

○ Occasional twitching in my eyelids & fingers

○ Sensitive skin

Reaction to eating dairy

Before going on a dairy-free diet, I had lots of gas and possibly elevated thirst. However, recently I've been experimenting with small amounts of cheese and milk and haven't had any bad reactions yet.

Health background

Interstitial cystitis for 8 years. Strict gluten-free diet doesn't affect my symptoms. Also had brushes with stomach pain. Unclear whether this is related to gluten.

Family history

Sister: positive TTG, positive transglutaminase, positive endomysial, negative biopsy.

Sometimes you discover you accidentally ate a trace amount of gluten; in other cases, you discover you ate a lot.

How much of a difference in your symptoms is there between those two cases? If you ate something that contains 1 ounce of flour, do you think your symptoms would be 5 times worse than if it had only contained 1/5 of an ounce?

I'm trying to figure out if getting glutened is more binary (either you get glutened or you don't), or linear (symptoms scale in proportion to the amount of gluten you ate), or somewhere in between.

I'm also interested to see if there's a difference between celiac disease and gluten intolerance in this regard.

I know I have a mild/moderate reaction to dairy products, but I've never been able to isolate whether my reaction is to casein, lactose, or something else. Last week I tried some cheese (high casein/low lactose) and didn't have much of a reaction.

To further isolate the source of my symptoms, I bought pure lactose powder, and plan to consume about 10 grams, the same amount as in a glass of milk. My physician says it's safe.

Can anyone think of a reason this would be less safe than drinking a glass of milk?

I might have the option to live in a foreign country for a year. Among my other priorities, I want to live in a place where it's super easy to keep a gluten-free diet.

I have identified the following countries as places where gluten is seldom used in the ethnic cuisine:

1) Thailand

2) Vietnam

3) Malaysia

4) India

Any others to add to the list? (I might indeed be going to a 3rd-world country like the above.)

I recently had an interesting discussion with a gluten-free friend about the following question:

What is safer to eat?

1. A dish from a grocery store that lists a tiny amount of gluten at the end of a long list of ingredients (e.g. caramel color)

2. A supposedly gluten-free dish at a restaurant that seems low-risk (e.g. Thai/Vietnamese/Indian) and may even advertise itself as having gluten-free items

Both of us currently avoid foods listing any amount of gluten, but we do go to restaurants. I wonder if this is irrational. As we all know, there are so many things that can go wrong at restaurants, even ones that say they have gluten free items:

Thanks so much for the detailed reply, FeelingAlone! I just saw it now. Will check out those resources and Dr. H.

By the way, I should add that a good chunk of my own investigating has revolved around the topic of gluten ataxia, so if you see that what I sent mentions that a lot, that would be why. Never the less, Dr. Hadjivassiliou is one of the world leaders at this time in Celiac Disease research.

Sadly, while there is some outstanding research being done in the UK, some in Ireland, and a smidge in Australia as well (sometimes Canada too), it seems to me that most of the good and relevant medical information hasn't made it's way to the United States yet and certainly hasn't impacted "traditional medicine" at this point for the better. I don't know where you live, KevinG.

But if you live in the USA, I'd say try to get in contact with

1) A celiac disease support group! Open Original Shared Link - Beyond just getting info, you get to know REAL PEOPLE who are dealing with difficulties too, and you can share stories, find laughs, and find new ways to cope...and generally be exposed to new ideas and theories about celiac disease, nutrition, and treatment/diet that you might not even have access to online. Local is awesome!

2) A lively online celiac disease community like this one and the community at MDJunction.com

3) A natural-minded Gastroenterologist (sp?) and other specialist doctors you may need to see. You may need to ditch the old ones and start fresh if you're having odd celiac-related problems that "traditional medicine" isn't helping solve. For this one, going back to contact #1 has been INVALUABLE to me! My friends at the support group have helped me find doctors that wouldn't treat me like I have 1,827 heads because of all my strange symptoms.

4) Contacts in the "natural health" area. Right now I'm trying to find a naturopath or someone who knows about natural medicine and can help me understand more about what's going on with my health than my docs can do. I personally believe there are answers out there to be had without medications and pharmaceuticals (many of which have gluten anyways), so I am trying to find out how I can use good foods and natural products to get my body healthy again. Having the support of an online community, access to research, local involvement in a CSA group, and other networking connections makes all the difference in the world! So see if a Naturopath might be an option or helpful to you.

This one looks interesting to me because of the article they posted here:

Open Original Shared Link

I plan to write a letter to them myself regarding some of my own health issues related to celiac disease.

Finally, use research tools such as PubMed and Medline. Many medical journal articles can be found for free and help you understand your health. The most important parts, if you don't have a medical background and find reading that stuff daunting (I can't blame you - it's sometimes daunting to me and I DO have a medical background!), will be in the introduction or (oh, I'm having brain fog and forgetting the word - it begins with an "s" and it means an abbreviated description of something....you probably know what I mean, sorry!) and then the conclusion of the research findings that typically break it down into a more real-life suggestion for medical practice.

Do be aware that not all studies are EQUAL in QUALITY. I've read some where I can say for sure that the research methods were very poor and the conclusion seemed to have little to do with the actual findings of the research without extreme extrapolation. Just be cautious.

Hadjivassiliou I do recommend without reservation, however. He's done an excellent job!

Good luck and let me know how it goes. Send me an email through the forum here and I'll try to respond. I'm happy to help if I can.

Who are the most prominent celiac disease researchers? I have a complex medical situation, and would like to see a doctor who is at the forefront of research in this field.

My Enterolab test was positive for Celiac but negative for casein intolerance (my results here). However, I know that I have a reaction to dairy products: mostly bloating and maybe some numbness, eyelid twitching, and thirst. I get this even with low-lactose dairy products, so I suspect it's caused by casein.

I'm trying to decide whether it's safe to incorporate some dairy into my diet. The immediate side effects don't bother me that much, but I am concerned that the casein could be causing hidden/permanent damage. I know that gluten can cause permanent damage without immediately obvious symptoms; does the same generally apply for dairy?

Thanks,

Kevin

My gastroenterologist ordered some blood tests for celiac; my results are below. His nurse told me based on the results that I don't have celiac and am not at risk for developing it. However, I had been on a gluten-free diet for months prior to the tests. (Occasionally some gluten slips in, but I am pretty careful.) Does that render the below tests invalid?

I am prone to get sick of a food if I eat it multiple times in a short timespan (e.g. days/weeks). For example, I found a delicious quinoa dish at a local store. I ate it around 10 times over the course of a couple of months. I now am almost repulsed at the thought of eating it again.

The exception would be things that I've eaten my whole life. I could eat rice or drink orange juice every day without getting sick of it.

Does anyone else find that they get tired of specific dishes more easily than others? I'm curious whether this is a celiac-specific thing.

(Note: by "sick" I don't mean physically ill; I am using it in the slang sense of "tired of".)

What nutritional deficiencies should people on Gluten-free Casein-free diets be most careful about?

• Fecal Anti-gliadin IgA (normal is <10): 52 Units
  
• Fecal Anti-tissue Transglutaminase IgA (normal is <10): 30 Units
  
• Quantitative Microscopic Fecal Fat Score (normal is <300): Less than 300 Units
  
• Fecal Anti-casein (cow’s milk) IgA (normal is <10): 6 Units
  
• HLA-DQB1 Molecular analysis, Allele 1: 0201
  
• HLA-DQB1 Molecular analysis, Allele 2: 0301
  
• Serologic equivalent: HLA-DQ 2,3 (Subtype 2,7)
  

I have read the result interpretations from Enterolab as well as descriptions on this forum, so I know these results mean I have gluten sensitivity. However, I am trying to figure out just how severe the two abnormal readings are. Do the results of 52 & 30 indicate just a mild problem, or are they severely elevated to the point where it's critical to eliminate all gluten immediately?

For the past 3 years I have been trying to avoid gluten and diary but I'm not 100% strict, so I know gluten slips in. I get a few on-and-off digestive issues like stomach pain if I eat too much, canker sores, and aftertaste in my mouth, but nothing extreme. (My sister, however, has had very bad reactions to gluten and is 100% gluten free.)

Any info would be appreciated.

there aren't any dairy products that contain casein and *no* lactose.

Interesting, tarnalberry. On the flip side, are there any foods that contain high lactose but low casein?

In one of your other posts, you mentioned 4 types of adverse reactions to dairy (temporary lactose intolerance, genetic lactose intolerance, dairy allergy, and casein intolerance). Is there any kind of ad-hoc dairy elimination diet I can try in order to isolate what aspect of dairy is the culprit in my case? I tried your recommendation of eating yogurt with lactaid, and I still have problems. Now I'm trying to figure out if I can narrow it down even further (e.g. cow vs. non-cow, casein vs. some other ingredient, etc). Any ideas?

Thanks,

Kevin

Hello,

I tested negative for Celiac disease, but definitely have an adverse reaction to gluten. I have been on a gluten-free diet for months now.

I would like to ask if there is any pattern to the following symptoms. I know most of them have already been discussed on this forum, but I'm wondering if they fit together in any meaningful way (i.e. if they all could be symptoms of a disorder with a particular system).

-Extreme thirst (polydipsia) [note: I tested negative for diabetes]

-Skin marks very easily when scratched or pressure is applied (dermatographia). For instance, if I have a bag strap over my arm, a red mark will be left for a while.

-Feeling of numbness in my left flank

-Hands feel weak sometimes; twitching in eyebrow and occasionally fingers

-Urologic discomfort

These symptoms become more pronounced when I'm eating gluten. I know it's related to gluten, but I'm interested in knowing specifically if these symptoms cluster together somehow.

Thanks!

I'll just add to the list the embarrassing symptom of my pee having bubbles in it. I got it checked out by the doctor, and I think I had slightly elevated levels of albumin in the urine.

Hello,

I tested negative for Celiac disease, but definitely have an adverse reaction to gluten. I have been on a gluten-free diet for months now.

I would like to ask if there is any pattern to the following symptoms. I know most of them have already been discussed on this forum, but I'm wondering if they fit together in any meaningful way (i.e. if they all could be symptoms of a disorder with a particular system).

-Extreme thirst (polydipsia) [note: I tested negative for diabetes]

-Skin marks very easily when scratched or pressure is applied (dermatographia). For instance, if I have a bag strap over my arm, a red mark will be left for a while.

-Feeling of numbness in my left flank

-Hands feel weak sometimes; twitching in eyebrow and occasionally fingers

-Urologic discomfort

These symptoms become more pronounced when I'm eating gluten. I know it's related to gluten, but I'm interested in knowing specifically if these symptoms cluster together somehow.

Thanks!

Hello everyone,

I'm looking for a resource that describes the timeline of progress on a diagnostic gluten-free diet; one that describes how many weeks/months it takes to see change in GI symptoms vs. change in central nervous symptoms, and how much longer it takes someone who has had minimal damage vs. someone who has had long-term damage form gluten.

I'm also wondering how eating gluten intermittently affects the timeline for the diet -- i.e. if I'm on the gluten-free diet for a month, then eat some gluten in one meal, how far am I set back? Do I start the clock from zero again, or am I effectively at two, three, four weeks, or something else?

I tested negative for celiac, by the way, but am trying the gluten-free diet because a family member has celiac and I have another health condition that I think could result from gluten intolerance. I just finished month 1 of the gluten-free diet.

Thanks!

Hi everyone,

I started my gluten-free diet because a sibling had a positive celiac blood test. My blood test was negative, but I decided to try the gluten-free diet anyway because I have other symptoms (hypersensitive bladder) that I figured might be secretly caused by gluten. I have never had bothersome GI symptoms apart from some gas and a small feeling of numbness in my left flank.

I have been on a gluten-free diet for 3.5 weeks now, which has been pretty strict with the exception of one instance where I realized I have been ingesting gluten about once a week.

The results:

• Bladder symptoms have not gotten better
  
• My flank feels less numb, although I never paid that much attention to it
  
• My frequency of #2 has decreased from about twice daily to once every other day, although I do not feel this is necessarily better.
  
• I have been feeling strangely thirsty.
  

Here is what I am wondering now:

1. How long should I continue on the gluten-free diet? (Considering that I tested negative for celiac.)
   
2. Do I need to be as strict about going gluten-free as someone who tested positive for celiac disease?
   
3. How does eating gluten once affect the timeline of progress on the gluten-free diet? (i.e. do you start from scratch each time you get glutened?)
   

Thanks so much!

Kevin

Thanks for the replies everyone! I restarted the gluten-free diet and have noticed the same GI symptoms. But I'm very interested to see what unfolds a few weeks from now!

Hi all,

This is my first post here. I have an interesting story: I got worse on a wheat-free diet.

I have very few gastrointestinal symptoms except for a bit of bloating. My big problem is interstitial cystitis, though.

My sister was recently diagnosed with celiac disease (two independent positive blood tests + negative biopsy). So, I decided to get a blood test for celiac myself. It turned up negative. But just to be sure, I tried a wheat-elimination diet. After several days on the wheat-free I started to get diarrhea and gas pain, a pain that sometimes made me feel as if I had been kicked in the groin (I am a man). My interstitial cystitis symptoms did not change at all, and after 10 days I abandoned the diet (short trial period, I know).

Could this paradoxical worsening of GI symptoms on the wheat-free diet mean anything? Would a normal person experience this?

Thanks!